Treatment Needed?

[AAli]

Hi All,

My last CBC report (03 days back) was very depressing. My WBC has raised to almost 2 hundred thousand (200,000). RBC still just above 4 and HG just above 12. ALC 98% (198).

But still no significant weight loss. night sweat, lymph nodes are there.

One of my oncologist is of the view that now should start FCR chemo. But other is suggesting that only WBC raise is not enough to start chemo. I also got an option to start a lighter chemo LEUKRON+steroid initially to lower down my WBC.

Only diffidence I feel is of fatigue... Any one having such experience? Also should I go for CT Scan or PEt scan by myself as none of doctor has advised to do so. My last ultra sound in July was perfect.

Best regards

[Cllcanada Top Poster CURE Hero]

Hi

The number used for CLL progression is your absolute lymphocyte count (ALC). If this count double in six months it is a flag to start treatment discussions....BUT other factors like B symptoms, other blood counts dropping, enlarging nodes, over all health... all play a roll.

You might consider a second opinion at this point with a CLL specialist, but I know many patients with WBCs over 300K who work everday and have never considered treatments...

~chris

[AAli in reply to Cllcanada]

Hi Chris thanks for guidance.

I am sure that in last five months (March till date) it is not doubled.

On 19 March it was 161 and on 27 Aug it was 198.

[AussieNeil Partner Administrator]

Hi AAli,

What's important is how you feel. Have you read these pinned posts?

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

Unless your fatigue is becoming so very extreme that you want treatment now, why get a scan, particularly when neither of your doctors have suggested it. Even your doctor suggesting treatment hasn't suggested having one and CT scans are falling out of favour for CLL patients now.

Neil

[AAli in reply to AussieNeil]

Thanks Neil

Any parameter to judge or measure fatigue?

regards

[AussieNeil Partner Administrator in reply to AAli]

There's at least one scale but I'm not familiar with it. Chris would know though. Basically if your fatigue is so bad that you are struggling to find enough energy to function, then that should qualify you for treatment.

[rlyndecker]

For me, it was a combination, my WBC is only a bit over 100 thousand but my ALC had doubled in 6 months, I have the night sweats, lymph nodes all over but ones in places that are causing issues and extreme fatigue. Even then my Oncologist wasn't sure he really wanted to start, he discussed it with me and with his colleagues. I discussed it with another oncologist too (but he wanted to start me a year ago so I guess that I sort of knew what he was going to say).

I start FCR in a week.

As hard as it is, I'd say wait until you really need it. If fatigue is your #1 issues like it was for me MANY years ago, make sure you DEMAND they rule everything else out. Sleep Apnea, any lung issues etc. It was always a fight to do that until I found the right general practicioner....

[buckinhard in reply to rlyndecker]

Hi Lyn !

I've been thinking about you. I'm happy you have figured out what treatment you're getting. I'm praying for the very best results for you and sending hugs. Hopefully you'll be fit enough to work !

Denise

[rlyndecker in reply to buckinhard]

Thank you!